You are here

Resources Index

UPDATE - SCID in Indiana 2/14/18
HB 1017, which adds which spinal muscular atrophy and severe combined immunodeficiency to the list of disorders in the newborn screening requirements for Indiana, passed the House. It has now crossed over to the senate and has been referred to the Senate Committee on Health and Provider Services. IDF will be monitoring its progress and advocating in support of its passage to help ensure funding is allocated to implement SCID screening in the coming year....

Lara Richter, a college student living in Brazil, was writing a paper on her primary immunodeficiency disease (PI) when she came across the Immune Deficiency Foundation (IDF) in her research. Lara was pleased to see all that IDF has to offer, and she hopes that someday a foundation like IDF can reach places as far as Brazil so more people around the world can find support.
Lara reached out to IDF and wanted to share a little about herself to inspire others. This is the first time that she has...

Renew Your Volunteer Position before February 9
Looking back on 2017, IDF is thankful for the hard work and dedication from all of our volunteers. You are the heart and soul of many of our programs. From supporting IDF staff at special events, to outreach and raising awareness for primary immunodeficiency diseases (PI), your willingness to devote your time and skills helps our community.
With a growing demand for services and programs from IDF, we are counting on our volunteers to renew for...

Hear from Michelle on Her Life with PI
“IDF means so much to me and has helped me in so many ways. Most of us know how IDF directly helps with research, education, support and providing resources for the community,” explained Michelle Searle, member of the IDF community. “But what you may not know is how it helps me and so many others indirectly.”
Michelle Searle is an active member of the PI community who has been involved with IDF Walk for PI – Fort Lauderdale for the past three years. As a...

IDF has an exciting research project that developed from discussions in the IDF PI CONNECT Research Forum and IDF Friends. Many individuals with PI report having a lower than normal average body temperature. As a result, when they do have signs of an infection, frequently their temperature does not rise to 100.4°F, the threshold upon which doctors begin to prescribe antibiotics. If this occurs, patients who have infections may not receive critical antibiotics due to missed signs of fever....

These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
Question 1: Spinal Fusion Question 2: Medicare Advantage Plan
Question: I need to have a spinal fusion, which involves a bone graft. What is the best choice for a patient with CVID currently on Ig therapy? Are there more problems with donor bone vs a bone graft from my own hip?
Answer: The donor bone graft should be sterile so this does not present a problem. If...

IDF President & CEO John Boyle recently talked with Emily V. Gordon, the real Emily from The Big Sick, to get the scoop on the story that so many in our community can relate to.
Not many people find themselves checking into the hospital with what appears to be a super flu, as the character Emily does in The Big Sick. The sudden onset of symptoms was a shock to not only her but also to her friends and family. While the movie, based on actual events in the life of Emily V. Gordon, portrays...

It is with great sadness that the Immune Deficiency Foundation (IDF) shares the news that Sara LeBien died January 14, 2018.
Sara and her husband Bob were integral in the founding of IDF. They, like the other families and physicians involved in the early days, saw the need for a national organization dedicated to improving the diagnosis and treatment of people with primary immunodeficiency diseases (PI) after their son Mike was diagnosed.
Sara wrote IDF’s popular illustrated book, Our...

Have you ever thought about switching between IVIG and SCIG or vice versa? Dr. Mark Ballow discusses the advantages and disadvantages of both IVIG and SCIG to help decide which one is best for you.
Click here to see other recordings in the series
This program is supported by a charitable donation from CSL Behring.

The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.

IDF Insurance Center

Our Patient Insurance Center provides information regarding insurance issues, as well as other possible sources of assistance, for you and your family.

The IDF Peer Support Program is a caring community that connects people and patients who share similar relationships to primary immunodeficiency (PI). Participation in the program give syou the opportunity interact with one of IDF's peer support volunteers, who is a trained volunteer with personal experience living with PI.